Elders that control caregivers after their death

I have been a reader of caregiver lists for the last few months after searching for someplace with others that could identify with the struggles of taking care of my 90 year old mother who was always dissatisfied with both her life and those around her. I have been her sole caretaker (in her home)for the last four years while working (another)full time job out side of the home.

Like many others, I really lived two lives during this time, hers and mine. I took her to multiple doctor appts, advocated for her rights, paid her bills, cooked her meals, monitored her prescriptions, arranged for any home health care, and all of the other duties that come along with this type of commitment. Also, like many caregivers, I never heard a word of thanks or comment of appreciation during this time, but rather a daily barrage of complaints about the level of my care (which she constantly told me was nonexistent) and threats of the repercussions that were to come should i not do what she wanted at the exact time and way that she wanted it done.

My mother had a long history of anxiety and catastrophizing that would cause her to behave irrationally if her needs weren't met. She often threatened to call the police and have me removed from "her house," for instance if I talked about following through on a suggestion from one of my siblings that she get a wheelchair to help her be more mobile. She frequently complained to others (my siblings and home health nurses, etc)that I wouldn't do what she wanted, was trying to kill her etc., but they of course knew that the opposite was true and would often say "God bless you, I don't know how you do it!", recognizing that her constant complaining and her oppositional behavior was who she was..

A few weeks ago, I let my mother know that I would be taking a trip to visit my daughter and grandchildren this month. She had a doctor's appt (pain shot for stenosis) during this time and we talked about whether to reschedule it for before i left, after I returned, or arrange for a volunteer to accompany her while i was gone. After much discussion and changes of mind, she decided it would be acceptable to schedule it before i left and felt she could wait the 4 days rather than take me up on the offer to bring her to the hospital for a check up to see if anything else was going on. Despite this arrangement, she reported that her pain was increasing and I ended up calling the EMT's to transport her to the hospital where she was admitted for a UTI that her PCP was aware of and had been treating. I arrived at the hospital before she was transported to a room and remained with her for most of that day.

When I arrived home later in the day, I received a call from the Department of Children and Families and was informed that there had been a complaint made against me for Elder Abuse based on my mother's report in the ER. Specifically, she had told them that "she needed to go to the doctors once a month for her diabetes and that I only brought her once a year, that she hadn't eaten in two days, and that i had knocked her medication out of her hand and wouldn't let her take it." When questioned about this later, she of course told everyone that she was "just kidding" and that I "shouldn't worry about it, that they had "no sense of humor," but by then of course it was too late and the wheels of the State system had begun to move.

I am currently under investigation for "medical neglect" which will be either "unfounded or founded." Either way, my name is now included in the State's database where, as a mental health professional who is seeking licensure, it will remain permanently even as I apply to take the State exam.

As a mandated reporter myself, I am aware of the rules and regulations concerning the reporting of abuse, but am angry, frustrated and outraged at the lack of research that was done before the ER placed this call. They had admitted my mother at that time, so she was in no imminent danger, there was no sign of bruising or neglect, they had access to her PCP's office who they did not call (she had just been there 2 weeks earlier for her checkup) and to her home health nurse who had been in the home each week for the last two months. Rather than call any of these professionals, they immediately placed a call that could not be reversed.

I am left now with arranging for my mother's funeral as she died 2 days after she was admitted to the hospital from rapid respiratory failure.. hours after they told me she was doing well… and coping with the aftermath of her destruction. Ironically, within 24 hours of being admitted to the hospital, she had called me crying to tell me that the nurses were neglecting her and that I "needed to come right away," which of course I did.

It is too soon to know what I can or should do.. the DCF worker cannot tell me how long this will take to resolve, but in the meantime I will still need to provide that caretaking role and cope with not only my grief at losing a parent, but the enormity of the situation she left behind.

Any suggestions for information on how to move forward in this type this type of occurrence would be helpful.

25 Comments

Dear stunned, what a horrific story! How terrifying to be a "suspect" when you were trying to help. I am so sorry for you. Wish I could help in some way. I am sorry for your loss, and the grief you must have losing your mom. And I am sorry for your shock at what has happened due to her dement. I believe every word of your story, because my Mom's a controller, too. They just aren't rational, and lying seems to go hand in hand with that. An outside professional might be fooled, not knowing the whole history, and behaviors often hidden from public view. I'm stunned with you. This is a scary situation. I'll be keeping you in prayer. Please be gentle with yourself. I'm praying you have many loving supporters to see you through this process, and that all goes better. Thanks for sharing your story. It reminds us to be circumspect, and ever-so-careful. Take care of you.

Comment Reported

Dear stunned, What a wonderful daughter you are. Don't worry, and have faith, that the truth will all come out, and you are innocent. I am so sorry for your loss, and my heart goes out to you, for the additional grief that you must endure. Take care of yourself, and things will always work themselves out, no matter what.

Comment Reported

You did everything you could, people believe you when you speak from the heart. No one can fake love. Maybe mimic, but everything will be okay. Even in this i feel your sorrow. This seems to be a very unrewarding job, but the man upstairs is all that matters.

the same thing happened to me, everyday for 9 yrs. and everytime i won! It's God. He will never leave you. Dont forget that. Lean on him. You did a great job that no one wanted.

I buried my dad 4mo. ago by myself, people run like rats when it's time to take care of a parent. If you have one friend/caregiver that gave you a thumbs up, hold on to what she said. Ignore the crazy stuff. You did what needed to be done. You chose not to walk away. Where were they?

Stunned, this is so horrible there are no words to describe it. It would be bad enough for anyone, but with your licensing coming up, it's even worse.

Nearly all of us have gone through times when the people we are caring for accuse us of not doing enough, or not doing the right things. Even when we show proof, it doesn't matter, as truth is not the issue. In your case, you have many people to vouch for you and the care you gave, so you will come out all right, but going through this is truly a nightmare.

We are thinking of you, mentally knowing this can happen to anyone who cares for someone with dementia or mental health issues. We are brothers and sisters in care and wish you the best outcome. Please keep us posted. Carol

Comment Reported

I feel for you as my mother, too, is controlling and jealous of any attention that I show for my father (she had a massive stroke in 2000, is a semi-invalid and her mental facalties were impacted as well...my father has been diagnosed with mild dementia, is 87 and is getting rapidly worse). Oh, and I live on a diffent continent 16 hours away but come home every 4 months for 3-4 months at a time at my expense to look after them (sorry to vent). All I can tell you is make sure you have a list of supporters and their full addresses/phone numbers who can provide evidence for you regarding your mother's physical and mental state (physicians, in home help, friends of the family, any establishments she's been in (hair dresser, etc.). I am so sorry you are going through this and it's a sounding bell for me because I would not put it past my mother to do something very similar. A hug to you and best wishes.

Comment Reported

Having worked with teachers who have been falsely accused, I woudl suggest that you document everything you have done for your mother, if you haven't already done so. Do an Aide Memoir, on which you write every doctor's appointment, things you did for your mother, etc. If yo can get a letter from her doctor documenting her dementia, do so. Otherwise, she may have been facing delirium, which would further exacerbate her symptoms and cause complaints. I had complaints from my dad for much, too, despite visiting every day and feeing him dinner.If you wrote on a calendar the appointments, do so. If your late mother's doctor can print out a list of appointments, all the better. Grocery bills, etc., to show how much food you bought. neighbours as witnesses.Not to be vulgar, but doesn't it piss you off the emergency staff don't get it! They sent my dad home with delirium, due to radiation treatments and a urinary tract infection. Totally undiagnosed.

All the best.

Comment Reported

I'm sorry to hear about the lose of your mother. I feel for you, because my mother passed away 6 months ago, and I was the sole caregiver of her. My brother was saying that I took advantage of her and neglected her, but he was never around to help. Things are just now starting to come in place. I sort a know what your going through.

Comment Reported

God Bless you. Get proof. Call the attending DR and get statements from friends relatives and professionals who knew the situation. The hospital should be ashamed of it's self and how dare they besmirch your reputation. Keep writing to us for support and don't give up. You are blessed.Linda

Comment Reported

What is interesting to me, with my parents, is that the child that is there and involved is 'neglectful'...and the one out of town, that call once in a while, is a 'perfect saint.'

The people who do the most become owned by the recepient. They seem to only become more demanding and tempermental...like a spoiled child. A spoiled child will behave in front of stangers, and yet they will make their home a living hell. It is difficult to set down ground rules with a parent, even after they become children again. Children with power. Not a pretty sight no matter what the age. Dad dosen't do time out.

PLEASE keep us posted as to the out come of your situation. My father has slandered us in the most frightful of ways. Fortunately most people know his history of illness, but one day, some well meaning person will make the call... I lose sleep about that. One day, someone will believe him. Fortunately, so far, those who believe him call us first, and fuss at me for being such a bad daughter. If they only knew. Child abusers never go away, they just become children themselves. Abusive children.

Who do I get to report him to? Why do we put ourselves through this? Because we do not want to be charged with neglect. Evil, bitter circle. I am starting to hate my life as much as he hates us.

Comment Reported

Wow. Talk about the lack of common sense in oversight entities when it comes to the elderly who display symptoms of dementia, confusion, and, even the physically and sometimes cognitively devastating effects of a long-standing, untreated UTI. What an outrage and travesty for the system to have any long-term caregiver tangled in such a nightmare without prompt review and findings.

That is the thanks a caregiver gets when it is all said and done? I would recommend you check online with your state's Office of the Attorney General Consumer Protection Division and ask them whether they would be willing to review the matter to ensure greater, rather than less objectivity, timely processing, due process, and, let them know your nursing license is at stake, which is your means of earning a living.

Let them know how long you took care of your Mom and those who knew, including her doctors, your level of care. Please let us know how this works out for you. What a chilling effect on any caregiver to have such a punitive system out there ready to pounce without any added corroboration, other than a patient's perhaps delusional rants, when there is no evidence of patient neglect. Is there anything at all they have told you that to them epitomizes neglect, even if not bruising?

I would ask for the specific allegations and examples of neglect, in writing, so that you may at least be allowed to speak to those issues.

Where is the due process in all of this? Are you at some point interviewed and allowed to respond to each of the allegations levied against you? I would hire an attorney and demand to be intereviewed face-to-face, with my attorney present. That's serious stuff, and it's the rest of your life and mental well-being which hang in the mix. How horrible! I am very sorry for the bureacratic tangle that has taken over your life and liberty at a time when you need to be healing and moving on with your life. Don't lose hope, and don't give up the fight to clear your name. Also do not hesitate to write a letter to the head of the agency that is investigating the allegations your Mom levied against you to request their full policy and procedure of how such allegations are reviewed, by whom, where filed, disposition handling, etc. You have every right to know. It is your life; not theirs! Am rooting for you that the truth will overcome the mayhem in your life right now. Keep sharing.

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